Rare Cancer: Gynecologic Extramammary Paget's Disease

I am just now reading these entries & I can't tell you how much I appreciate hearing from real people about this disease. At the same time I am truly sorry to hear about the difficult journey you both have been on.
I know I was lucky to have had an astute OB/GYN who saw a small "rough patch" which really didn't bother me & decided to do a biopsy. I believe he was as surprised as I to learn about Paget's. It was clearly early in the game, which I believe has helped my progress. I am a retired librarian, so I research everything, & I quickly learned what I would be facing. I searched far for an oncologist with some experience with Paget's, and I refused a radical vulvectomy because it is not a guarantee that Paget's will not return. After a first surgery with one male doctor, who did a "simple" vulvectomy, I found a wonderful woman at Emory in Atlanta who sees me about every three months, & so far with 4 more surgeries, my life has remained "normal" after each recovery. Fingers crossed that my good luck (if having Paget's is good luck?!), continues. Thank you for sharing your stories.

Yes!!! However, so far not invasive. About to have surgery #6. Very debilitating & frustrating. Good luck to you & good to hear from you.

@moffitt, I echo @pugpeople's simple yet complex question: How are you doing?

How are you doing?

I can’t tell you how sorry I am to read this. Your whole journey with EMPD just takes my breath away, and now to read that it’s a fast moving train. I hope the radiation treatments on your spine help. Please know I’m rooting for you.

I'm so sorry 💔 I have prepared for my death, saw "the light" ow fo

My EMPD has now spread to my liver and my spine(L-4). Radiation of the L-4 starts tomorrow. 10 consecutive treatments. Too many tumors on the liver to radiate or remove surgically. I was told that my EMPD is “a fast moving train.” We need to stop
or slow down the spread. I am still getting immunotherapy ever 3 weeks and have refused chemo. I do not want to spend whatever time I have left as sick as chemo has made me.

Thanks so much for the check in! It’s been 2 weeks since surgery and all is ok. There’s been very little pain which is saying a lot for 30+ stitches in my vulva:) Doc just messaged me yesterday to say there was no underlying cancer according to pathology but that there are multiple places where the margins aren’t clean. No cancer anywhere else so far!! This is a really frustrating cancer because the only treatment is more surgeries. Doc said even if it spread and the new spread was treated with radiation/chemo, the Paget’s of the vulva would not respond. So it seems I’ll always have an active cancer of the vulva and I’ll be checked every 3 months for the next few years. But, as I’ll tell anyone who’ll listen, I am actually lucky because I know I have cancer, vs so many who have it and don’t know. 🙂

@catlazz, it's high time I check in with you. How did surgery go? I'm hoping the scoping of the bladder and anus didn't reveal any unwanted surprises. How is the recovery?

Oh no. How are you doing now? I’m so sorry to read that it’s spread. I’ve read EMPD is often misdiagnosed ~ but for 6 years? That’s terrible. I’m sending you good thoughts and I appreciate your comment.